Transition from Early Invervention to School District LONG

September 8, 2004

Dear Friends,

I saw the recent thread on this subject and need your expert opinions as well.

ALyssa will be 3 in November and therefore discharged from Infant Toddler

Services (Early Intervention) that day. She is currently receiving feeding type

therapies from an OT. She was receiving help with gross motor skills, but she

has caught up to her peers in that area.

When we were in Chicago, Dr. H reduced Alyssa's tube feedings to 15hrs/day. We

have been doing 12 overnight and then 3 while she's napping as that is the most

convenient. After meeting with her OT, she was very excited to move toward more

oral eating. (that is our ultimate goal afterall) She reccommended making a

schedule in which her pump time and food times mimic normal eating habits. ie

3meals, 3 snacks. This greatly increases her waking pump time and would be

very time consuming (especially with a new baby due in 4 weeks). In addition,

I'm not sure whether or not it is a practical approach for our kids taking into

account her serious delayed emptying time. On the other hand, I don't know if

she can handle a bolus feeding for the same reason. I have no idea what to do

about this and am waiting for a response from Dr. H.

That said, I had a meeting yesterday with Infant Toddler and the school district

to discuss the transition from IT in November. As Alyssa only has

nutritional/g-tube needs they indicated she probably would not qualify for

special ed preschool which is the only type offered by our district. My concern

is that a private/community preschool may not want to take her because of her

tube. In addition, the rules and mandates are not governed the same since they

are not a part of the school district.

SOO, now that you have all that info, I have some questions. Does her diagnosis

and the fact that it is a recognized disablitiy require the school district to

accomodate her even if it is just because of a tube and she has no other special

needs? If so, how do I prove it? If not, is there anyone else who had a

similiar problem and did you find a quality preschool you could afford and then

how did you go about continueing the single therapy you needed? Did you go to a

hospital, did some other program fill the gap? What do I do between now and

kindergarten??

If you got this far THANKS and any and all advice is not only welcomed by

appreciated and needed greatly!!

Dayna, Mom to ALyssa, 34monhts, 25lbs 35inc

September 8, 2004

Hi Dayna,

I read your message over several times. I think I understand.

However, you might want to ask an educational consultant (advocate)

in your area. You may have to pay a fee for their expert answer.

Based on what you said ( again I'm no expert), I would guess that she

would not qualify, especially if she doesn't need PT, OT, Speech or

other therapy. If she just needs feeding help, this may not be

considered something that would interferre with her learning. You can

request ( in writing) that the school perform an evaluation. If they

refuse to do this or find she doesn't qualify, then you can appeal

through whatever process is setup.

Since she needs to be tube fed during the day, the school nurse will

have to be involved but this still may not qualify her for special

ed.

Please keep in mind that in these hard financial times, schools are

looking for any reason they can to exclude children from Special Ed.

They will deny it of course but I have seen it all too often.

Since Jodi Z. and Deb B. have a lot of experience with special ed,

they can offer better advice than I can.

Hope this helps.

Ken M

> Dear Friends,

>

> I saw the recent thread on this subject and need your expert

opinions as well. ALyssa will be 3 in November and therefore

discharged from Infant Toddler Services (Early Intervention) that

day. She is currently receiving feeding type therapies from an OT.

She was receiving help with gross motor skills, but she has caught up

to her peers in that area.

>

> When we were in Chicago, Dr. H reduced Alyssa's tube feedings to

15hrs/day. We have been doing 12 overnight and then 3 while she's

napping as that is the most convenient. After meeting with her OT,

she was very excited to move toward more oral eating. (that is our

ultimate goal afterall) She reccommended making a schedule in which

her pump time and food times mimic normal eating habits. ie 3meals,

3 snacks. This greatly increases her waking pump time and would be

very time consuming (especially with a new baby due in 4 weeks). In

addition, I'm not sure whether or not it is a practical approach for

our kids taking into account her serious delayed emptying time. On

the other hand, I don't know if she can handle a bolus feeding for

the same reason. I have no idea what to do about this and am waiting

for a response from Dr. H.

>

> That said, I had a meeting yesterday with Infant Toddler and the

school district to discuss the transition from IT in November. As

Alyssa only has nutritional/g-tube needs they indicated she probably

would not qualify for special ed preschool which is the only type

offered by our district. My concern is that a private/community

preschool may not want to take her because of her tube. In addition,

the rules and mandates are not governed the same since they are not a

part of the school district.

>

> SOO, now that you have all that info, I have some questions. Does

her diagnosis and the fact that it is a recognized disablitiy require

the school district to accomodate her even if it is just because of a

tube and she has no other special needs? If so, how do I prove it?

If not, is there anyone else who had a similiar problem and did you

find a quality preschool you could afford and then how did you go

about continueing the single therapy you needed? Did you go to a

hospital, did some other program fill the gap? What do I do between

now and kindergarten??

>

> If you got this far THANKS and any and all advice is not only

welcomed by appreciated and needed greatly!!

>

> Dayna, Mom to ALyssa, 34monhts, 25lbs 35inc

>

September 8, 2004

hi dayna!!

christopher is in the disabled preschool at our elementry school

based on the fact he is RSS and has technically a disability. he

receives ssi as well. we are in nj so i dont know how it would work

where you live. good luck!!

jodie c.

-- In RSS-Support , Dayna <daycarney@e...> wrote:

> Dear Friends,

>

> I saw the recent thread on this subject and need your expert

opinions as well. ALyssa will be 3 in November and therefore

discharged from Infant Toddler Services (Early Intervention) that

day. She is currently receiving feeding type therapies from an OT.

She was receiving help with gross motor skills, but she has caught

up to her peers in that area.